Bone Mets Thread
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Hi bone mets ladies. Pain with bone mets varies for me for different reasons. @xsuzx I’m sorry for what you are going thru with the bone Mets showing up so quickly after your original breast cancer. I had gone 13 years before it showed up in my bones. Ribs ,Thoracic & lumbar spine., hip, sacrum, tailbone and last month a new lesion on my Acetabulum (where thigh bone socket attaches to hip.) that was causing me new and sharp pain when walking and pain sleeping on my side and groin pain. My Oncologist had his Radiology oncologist consult and evaluate me for Palliative 10 day Radiation for the pain. I finished the 10 day course the day before Thanksgiving,. The Pain has gone away especially in my groin, but I still limp with a little pain the first few steps after getting up from a sitting position, then once i get going I can walk painlessly. I still have not walked around the block yet because it’s been too cold and windy. Here at the Jersey shore🥶❄️. it was a good that your oncologist did a liquid biopsy on you, which probably gave him a lot of information about your type of cancer and what medication treatment cocktail will work best for you.
@threetree Hey there. 🩵🌷. Whenever I have any pain that;s new, my onc has me scanned to see if there is anything progressing in the area that;s hurting, before he decides how to treat the pain with radiation. up until now I’ve never needed anything more than Exedrin, a heating pad, or the Voltaren gel. But the radiation seems to have helped.
@norah2024 I read your update. I;m sorry you are going thru your uncertainty right now. If you don’t feel convinced by the current. diagnosis, or that your doctor is recommending the best treatment, then you should go with your gut and get an opinion from an oncologist that comes highly recommended in your area…. having stage IV metastatic cancer is not something you want to have treated by a doctor who you don’t feel confident with. Has he done a liquid biopsy from your blood lab tests to look at the cancer genome dna to know the best med treatment for your type traveling cancer cells in your blood?.
@tougholdcrow Hi there 😊🩵
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oh thank you for getting back to me. I go for my first radiation consult tomorrow morning so hopefully we can get this ball rolling. Even pain pills don’t seem to help but I meditated and it has calmed down thank goodness. I had it yesterday and today. Hopefully it will stay manageable. Thank you for sharing your sternum story.
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Shana girl, it has been 8 years since my original LCI and they did lumpectomy and Arimidex for 5 years. So it’s 8 years between. Is that soon? What is a liquid biopsy? Is that the genetic testing he did my last visit? I know I will become more familiar with all of this…..and thank you for the quick response. I’m a little nervous about tomorrow, and glad radiation helps the pain. Thank you everyone ❤️
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Thank you for your reply.Regarding changing doctors, I have thought about it and my family has advised me to do so. However, he is considered one of the best doctors here and has an excellent reputation, which makes me hesitant to leave him and start over with another doctor.
Especially since I no longer have insurance after my husband retired and we began paying out of pocket. This is something many hospitals do not like, as we carefully review every test to determine whether it is truly necessary.
I started the new medication about a week ago, and I have an appointment with the doctor in three days for blood tests to see how well my body is tolerating the treatment. I hope things go well so that I do not have to change doctors again.
As for the liquid biopsy, I did have it done while I was on Kisqali, but the process was not well organized. I never clearly knew which mutations were tested for, nor what the actual results of that biopsy were.
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Hi all, I don't know what's bone pain or what's overuse or what's just post-exercise (bad form) pain. I'd say it all mostly comes and goes, so it's probably not cancer pain. There's a point where you get old and you have all kinds of aches and pains anyway, so I'm waiting to see if something is persistent over time. My heart goes out to all of you suffering any debilitating or lingering pain and to all of you in the early days of this wretched disease.
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@shanagirl - you had 13 years before the bone mets hit, @xsuzx - you had 8 years. I only managed 3 🙁. @tougholdcrow - I agree that a lot of these pains, as in the sternum, are from all sorts of things and not necessarily mets. I get pain from exercise, inactivity, posture and ergonomic problems, and the weather. My oncologist too, suggested that the pain I have in my sternum, and in the area below it, is likely "multifactorial", so we're just keeping an eye on things. I did have a scan on Veterans Day and they saw nothing "glaring or acute" at that time. Going for routine scans again today (CT and bone with contrast), so we shall see. It's always so scary and stressful!
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@threetree GoodMorning I totally agree with you about how the bone met pain varies with different circumstance's; last week when a winter snow storm blew thru I felt it in my bones where know I have stable lesions in ribs 5 & 9. stabbing pain on & off. Also where my cervicle vertabrae facets where the neurosurgeon cauterized the nerves in radio frequency ablation procedure during the summer to stop the pain for a year. i felt where the procedure was done on the back of my neck on C3 C4 C5 C6 I felt like I had a bad sunburn back there, ..it’s like barometric weather changes affect my bones everywhere ther are met lesions or osteoarthritis…. not fun. So I just pop a couple of Excedrin and a cup of tea and the pain goes away. I hope your scan’s go smoothly today keep you informed., and resolve any questions and anxiety you may have @threetree .🩵in your pocket today😉
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@tougholdcrow yes those aches and pains i was getting during PT. I knew it was because my bones and muscles were not the same as they used to be.. My Drs want me back in PT for my neck which is not bone mets but arthritis. My Rad Onc wants me in PT in a few weeks after I recover from the radiation. Now they will do PT for the new issue of my Acetabulum and groin. And my neuro guy wants me to pick up th Neck PT to keep my neck strength up.🙄
I am very obsessive about KNOWING exactly where each metastatic lesion is located so I can visually keep track of stable or progression. I made phot screenshots of diagrams of spine, ribs neck sacrum hip & coccyx tailbone and logged the size of mm or cm and then when I get new scans I can keep up with what’s new, what’s old and stable……. . the number of each spinal rib and cervical bones are identified.
Last week I did an image of the posterior acetatabulum and frayed labrum in my hip and groin and know the new lesion is 1.5 mm
Stage IV cancer sucks. these were never things I wanted to research and learn about.😕
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@shanagirl - Thank you so very much for the good wishes re my scans later this morning. It's a dreary, drippy, dark day here and I'm just bummed and dreading the whole thing. I will take your good wishes with me, and I'm sure they will help me get through this in a little better mood!☺️
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Threetree, in your pocket for your scans!! ❤️
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Thank you ladies. Apparently my pain is from Mets. Got tattoo today and starting rads as soon as they can fit me in. Never thought I’d look forward to radiation. Have a nice evening and thank you❤️
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@norah2024 Regarding Liquid biopsy, I never really could understand it in my earlier years of metastases. But I had noticed the scanned document results on MY CHART portal under test results for Liquid Biopsy. It was a pretty detailed 4 pg chart of letters and numbers identifying genomic dna of traveling tumor cells in the blood from the original breast tumor. Basically what I gleaned from it was the finding of:
GTC Liquid biopsy evidence of mutations
KMT2 ATM DNMT3A PIK3CA IGLL5 genes and the one they focused on in the evaluation was PIK3CA
So the liquid biopsy analyzes your original tumor cells in your blood to decide which type of chemo treatment works against those specific genes to keep them from mutating and progressing to other organs. I wish I outdo tell you more @norah2024 ,but it’s so deep I had to just choose not to try and understand it, and trust that my oncologist knew exactly what he was going to treat the bone mets with…which was for me Verzenio pill twice each day am & pm, Fasodex the hormone inhibitor , and XGeva a monoclonal antibody. I get these two drug s once monthly in injection ….Fasoldex in the butt one shot in each buttock cheek, and the XGeva injection in my upper arm……no infusions just those 3 monthly injections along with my daily Verzenio pills. I think a lot of my gone pain and other side effects all contribute to the daily feelings of fatigue, and body aches and stuff like that that. So I hope this helps you.
I hope your Dr is a board certified Oncologist and has direct access to the information of what he is treating you with and understands the stress on you with changing your meds because of your torn labrum. Is he affiliated with a cancer center in your area?
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@tougholdcrow @shanagirl @threetree
I completely agree with you, and your words will reassure many people like me who live with bone pain all the time.
I will share my personal observations.
I always experience bone pain in different areas; each time it lasts for a few days or weeks, to the point where I start to imagine it is something serious.
However, the tests do not show anything.
When there was actual progression in the tibia, which later showed on imaging to be cancer, the pain was more like something constant but mild. There was also a sensation of heat at the tumor site, similar to an electric current starting from the upper leg and traveling down to the foot—not an actual current, but a feeling of heat.
At that time, I informed my doctor, but before the disease spread to the bones, he did not give it much importance and only ordered PET scans up to mid-thigh, despite my repeated complaints.
It later turned out that the tumor had returned to the tibia, which had never been included in any of the scans.
Now I am experiencing pain in the lower shoulder and the corresponding area in the front of the chest at the mastectomy surgery site.
However, it does not persist all the time; it only occurs when I get up from sitting or sleeping, and it limits my ability to move my arm or do any physical effort.
Thank you for all the information in your post about the liquid biopsy
I will come back to you to explain what happened with me 🧡
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Thank you for the explanation regarding genetic testing. 🙏🏻🙏🏻
According to my doctor, genetic testing was planned for BRCA 1 & 2, ESR1, and PIK3, but only BRCA 1 & 2 were actually completed.
When I asked about a liquid biopsy, I was told it had been done, yet I only received the results of the initial tests. In addition, biopsy samples taken from the L4 vertebra were sent for analysis, but after a month I was informed that the tissue was insufficient for testing.
Overall, the process has felt unclear and fragmented.
Regarding my doctor, he is a highly qualified, board-certified oncologist, and I do not question his knowledge or experience. He practices at a well-known hospital with a strong reputation.
My concern is specifically about how my treatment was changed. The recommendation to move to Enhertu appeared to be based mainly on rising tumor markers and a very small area of progression in the tibia, without clear confirmation of the cancer type associated with that progression or definitive evidence that Kisqali had fully failed.
The current treatment with Afinitor and Exemestane was only suggested after I strongly requested an alternative. I am still not comfortable with the way this treatment decision was made and remain unconvinced that Kisqali had completely stopped working.
Thank you so much for taking the time to explain everything and share your insights. I truly appreciate your support and guidance.
🤗
I just wanted to clarify that my medication was changed because of progression in the tibia and increased tumor markers, not due to my torn labrum.
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@norah2024 It sounds to me like you are knowledgeable and on top of your care. Of course you can always seek a second opinion, which is pretty routine in these situations. I hope the new treatment goes well.
@shanagirl Yes, who would have thought we'd be spending our golden years on this!
@xsuzx Wishing you a smooth journey with the radiation and I hope it greatly relieves any pain.
@threetree Thinking of you.
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@norah2024 I’m relieved that you are being treated by a board certified oncologist and highly respected. Just trust that you are in good hands and he has your type of cancer in mind regarding the treatment he’s chosen. Maybe you can mention to him your specific concern about the change in treatment and ask him to explain why the move to Enhertu based on the rise in tumor markers and why he thinks the Kisquali didn’t prevent progression in the tibia..
I want to ask my oncologist the question of why the Verzenio I am on did not prevent the new lesion on my sacral posterior Acetabulum, and frayed labrum. I’m praying that the reason this happened was not because the Verzenio isn’t working but because I was off it for almost a month because Odin dental issues and Pneumonia. I am now back on my regular treatment meds but I’m still worried about the new bone lesion. I guess this is the usual frustration we all face when there is any change seen on scans. So My next appointment for chemo follow up, lab and the XGeva & Fasoldex injections, I will ask these questions also..
Thinking of you all, ladies, have a nice day today.🩵
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Thank you so much for your care and for always checking in on me. Your words truly mean a lot 🤍
I sincerely hope that the treatment you are currently on will be effective in addressing the new area that appeared, and that the coming days will bring you reassuring news.
I will be sharing an update soon about my condition after starting Afinitor, including the side effects I have experienced with it.
Wishing you continued strength, comfort, and peace 🌿🧡
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So I start radiation Friday on my Sternum, and starting Monday on my left hip/back area. Very excited as I hope this will help with pain. Starting verenzio and a bone strengthening infusion monthly as soon as orders clear and I have a CT scan. Not sure what to expect after radiation, but from what I have read, I will be tired. I’m tired. I’m ready to get this party started. Really ready to be out of pain . Merry Christmas everyone ❤️🎄🐾🙏
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thanks Shanagirl. I am looking forward to getting off these pain meds. Big step last night is I slept in our bed after a month on sofa. Baby steps. I have a cane too. Not a cute one though. I’ll have to work on that! Thanks for your encouragement.
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This is an update on my condition after starting
Afinitor and Exemestane.
I am in the first month of using this drug combination after Kisqali and Faslodex stopped working.
In the first days, I suffered from pain at the back of my throat and pharynx, and I continued using Magic Mouthwash for two weeks.
I developed a severe skin reaction on my face (around the nose and lip and down to the chin). The area was very red and itchy.
I initially used sunscreen, but it did not help.
I then switched to a cream containing corticosteroids, and the symptoms resolved after about four days.
After that, another skin reaction appeared on the right side of my body (under the armpit, under the breast, and along the right side down to the hip). It was painful and caused severe itching.
I have been using a corticosteroid cream for four days now, but the improvement is very slow.
The itching is worst before sleep and is very disturbing.
The pain in the lower shoulder area radiating to the chest is still very bothersome. I have difficulty getting up from the bed or a chair. I do not know whether this is a side effect of the medication or, as the doctor said, muscle strain or a tear. He advised me to take a pain reliever, but I am very cautious about using any sedatives or pain medications because I am afraid of developing tolerance and them becoming ineffective when I truly need them in the future.
Regarding the chest pain, I was concerned it might be related to the heart or lungs, especially since I had pneumonia in October.
I therefore visited a cardiologist and underwent an ECG, a chest X-ray, and blood tests including:
- Complete blood count
- Kidney and liver function tests
- Cholesterol
- Blood sugar
- CRP, which was slightly elevated
The cardiologist told me that this pain is not related to the heart and is most likely either muscular pain or progression of bone disease.
The blood test results showed a mild elevation in liver enzymes, and I will repeat the tests in about two weeks.
What worries me most is the elevated inflammatory marker, the increased liver enzymes, and this persistent bone pain that has not improved or resolved for two weeks or more.
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